Why I Masturbate my profoundly disabled son

Saturday, 21 May 2016

Why I masturbate my profoundly disabled son.

In the last 30 years there has been
significant and substantive progress and advancement in all aspects of the
lives of persons with disabilities. The progress and advancement include
palliative care, physiotherapy, education, human rights, sexual recognition and
sexual rights. However, there are amongst persons with disabilities, a group
whose disabilities are so profound that their voices have not been heard and
have not benefitted from this advancement. The majority in this group of
profoundly disabled persons live their lives isolated and lonely in the dark
corridors of institutions or asylums or the far corners of homes and continue
to be ignored, marginalized and discriminated against. I hope that my story of
the love and care that I have provided to my profoundly disabled son,
specifically, the recognition of his sexuality and sexual expression will shed
some light into the silent, voiceless world of persons who are profoundly
disabled and will add to break the chains of ignorance and discrimination.

My story begins nearly 30 years ago when
my wife (now ex-wife) gave birth to a wonderful baby boy named Mustafa. It was
a moment filled with tears of pride and joy as most parents feel at the birth
of a son or daughter. However, our bubble of joy and feelings were shattered
when we later learnt that Mustafa was inflicted with a serious neurological
disturbance known as profound cerebral palsy. Even though we had this
heart-breaking news, I remember at the time promising to Mustafa that I would
protect, care and provide a life of happiness equal to his sibling sister who
was a year older.

Although the information in this paragraph
may seem mundane and familiar, it is important for you to understand the
neurological and physical disorder caused by profound cerebral palsy that led
to my recognition of the sexuality of my son and will also provide a peek into
the world of a profoundly disabled person. Over time the development of my son
has been painfully slow. As a result of the severity of the cerebral palsy,
Mustafa has limited motor control and cannot voluntarily move his muscles and
as a result cannot walk or sit and is practically bedridden. In addition to his
physical disability, Mustafa also faces profound intellectual disability as he
cannot understand and cannot verbally communicate through any language and his
ability to learn seems very limited. These disabilities put Mustafa with an IQ
well below 20 (it may even be unmeasurable) and is therefore classified in a
medical group of persons commonly referred to as persons with profound
intellectual and multiple disability (PIMD). However, while the group
classification as a person with PIMD generally reflect the negative disabilities
of Mustafa, they do not reflect his positive abilities. Given the profound
disability of Mustafa, he is surprisingly healthy and has not suffered any
major illness throughout his life. Mustafa sufficiently manages to eat his food
and he sleeps well. What is remarkable is that although Mustafa cannot talk or
express a language, he makes a variety of sounds to communicate his emotional
feelings of joy, happiness, satisfaction, pleasure, pain, anxiety, boredom,
hunger, etc. For example, he would make gurgling sounds of laughter and smile
to indicate his happiness. He would make soft sounds or at times loud rhythmic
sounds to indicate his contentment. He would scream if he is in pain and softly
whimper to indicate his boredom or his uncomfortableness or sigh and yawn if he
is weary or tired. His other forms of expression include his facial expression,
the look in his eyes and body language. He would pull stiff to something that
is hurting him or making him uncomfortable or by succumbing his body to something
that he enjoys. Although Mustafa’s sight is difficult to gauge, he does
recognize familiar people around him, for example, he often smiles or laugh
when I call out his name or whistle a particular tune and response vocally to
the care and affection I provide to him. Mustafa’s hearing, smell and sense of
taste all seem normal and he loves the outdoors as his eyes would light up if
he is taken to a new environment and would shout with excitement. As a result
of the variety of communication other than a verbal language, Mustafa
sufficiently manages to express his physical and emotional feelings. Besides
the communication that I have described there are hundreds of nuances of
communication between Mustafa and myself that forges a special bond between us,
a bond that all fathers and mothers who have a close relationship with their children
are familiar with.

It is also important to note that
Mustafa’s PIMD and cognitive impairment preclude him from any form of
independent living and is entirely dependent on me, his father for the constant
daily care, safety, nurture and the expression of his needs. This means Mustafa
has no autonomy or capacity to understand and is unable to make any decisions
concerning his health and care nor is he able to provide informed consent to
any of the care provided for by me and this means that Mustafa is legally
incompetent.

At around the age of seventeen years,
whenever I used to bathe my son or change his diapers or apply physiotherapy
and massages, my son started to express his sexual feelings by means of having
an erect penis, but his sexual behaviour was unlike earlier times, as he was
growing up. It was a consistent sexual expression and became more acute and
extended over a longer period of time. I also noticed his body pulling stiff
during his moments of erection possibly indicating a slight agitation or
confusion. As a father who understood sexual behaviour, I knew that my son was
trying to express his sexual feelings because of the arousal that was happening
around his body and that this sexual behaviour was no different than most
teenagers encounter after puberty in their personal sexual development. I did
not think it was strange because I knew my son’s abilities and disabilities and
while my son had certain physical and intellectual disabilities he certainly
did not have a sexual disability.

When I first encountered my son’s sexual
awakening I asked myself “Hang on, what should I do about my son’s sexual
expression?” I decided the best thing was to see what professionals were
advising parents and caregivers of children with PIMD in similar circumstance
of recognizing their children’s sexual awakening and then to act on the advice
given. I discovered a consensus amongst professional opinion that all persons
with disabilities are sexual human beings and have equal rights to sexual
expression. I also discovered that the most prevalent form of sexual expression
for individuals with severe or profound “mental retardation” was masturbation and that masturbatory expression was considered to be
both therapeutic and important for the overall growth and development of
individuals with disability. The practical advice given was that masturbation
could be self- practiced or provided by a partner and if this was not possible
than a sexual therapist or sex worker. However, to my surprise, all the
articles by professionals referenced their advice to persons with disabilities
who had the capacity to understand and provide consent, even if this was in a
limited way. The advice ignored and excluded those persons with disabilities
who could not understand or provide consent. The main reason for the exclusion
was that professionals treated persons with disabilities as a homogenous group
based on their IQ score and used the standard of a profoundly disabled person
as a person who was able to understand and communicate consent. This standard was
used despite
the vast differences of disability within the group. As Craft and Downs aptly
stated “The label of profound and multiple impairment is deceptively succinct
and in numerical terms it covers the smallest proportion of those with learning
difficulties. However, the label masks the enormous diversity subsumed within
it.” (Sexuality and Profound Multiple Impairment).This exclusion created a contradiction of the ethics
proposed that all disabled persons are equal sexual human beings, since it discriminated
against profoundly disabled persons based on their intellectual capacity. On
the one hand you had professionals stating that all disabled persons are equal sexual
human beings and should not be discriminated based on their disabilities and on
the other hand you had professionals denying sexual therapy treatment to
profoundly disabled persons because of their disability of not being able to
understand or provide any form of consent.

After reading and studying the advice given by professionals regarding
the sexuality of persons with PIMD, it left me bewildered and perplexed and in
a sense in a “no man’s land.” I thought the only way forward was to treat my
son equally to other disabled persons and apply the professional advice given
to other profoundly disabled persons, namely, therapeutic masturbation to
relieve and gratify my son’s sexual expression. As Mustafa’s profound
disability, both physically and intellectually, excluded him from practicing
self-masturbation or having a partner, the only alternative was to have
therapeutic masturbation applied by a sexual therapist or sex worker. However,
living in South Africa, I found myself in a difficult situation or predicament
regarding the professional sexual therapist or sex worker to provide for the
therapeutic masturbation of my son. There are no medical or other professionals
such as physiotherapists or sexual therapist providing a service of therapeutic
masturbation to people with disabilities and the only alternative was to
consider the use of a sex worker. However, this option was also fraught with
difficulties. First of all, sex work is illegal in South Africa, secondly it
implied additional financial resources and the burden of payments on top of the
high cost of looking after all the needs of a disabled person that I can ill
afford and thirdly, I am not aware of any sex workers in South Africa who are
trained to provide for the sexual therapy requirements of persons with
disabilities. It was at this stage that I soon came to realise that there was
no alternative way to provide the therapeutic masturbation that my son needed
other than to apply the therapeutic masturbation on my own.

I remember the first day I applied the
therapeutic masturbation to my son. It felt completely natural as I already had
a deep sense of intimacy with my son’s body through the process of massaging
him, bathing him, changing his diapers and cleaning and touching his genitals
and other private parts. The therapeutic masturbation was a natural extension
of what I was already doing in taking care of my son’s body. I also remember
how my son expressed a sense of relief, delight and happiness with a smile
followed by laughter and other sounds of contentment when I applied the
therapeutic masturbation. His body also succumb through orgasm to indicate his
enjoyment of the masturbation. The reaction indicated a positive acceptance of
the therapeutic masturbation by my son, both physically and emotionally. The
therapeutic masturbation also led to a calmness in my son’s behaviour and he
continues to show his contentment and happiness to all around him.

After the decision of applying therapeutic masturbation to my profoundly
disabled son I contemplated on my action and in the year of 2007 decided to
publicly pronounce on my action. The reason I decided to make an announcement was
threefold. Firstly, it was my advocacy of human rights. I felt that as a parent
I had the fundamental right to positively influence my son’s sexual development
and as a father who has been personally looking after his son’s health and
interests since birth, I could not ignore his sexuality. Had I done nothing, I
would have been failing in my duty and it would not have been in the best
interests of my son. Secondly, I was inspired by the story of Ashley X, a
severely disabled incompetent young girl whose parents opted for oestrogen
therapy, a hysterectomy and breast removal – the so-called ‘Ashley treatment’ –
in order to reduce her projected adult weight and improve her quality of life.
I felt as if I was in the shoes of Ashley X’s parents, trying innovative
medical treatment to try and provide her with happiness and a good quality of
life. Thirdly, I felt I had a duty and responsibility not only to my child but
to all the other children with PIMD whose sexuality and sexual expression was
not recognised or ignored. The initial reaction by the public when I first
disclosed my action was similar to the reaction of the parent’s medical
treatment of Ashley X, one of shock and disgust. It was only when I began to
explain the masturbation as a therapeutic sexual treatment that was taken in
the best interest of my son’s health and wellbeing that it changed the
perception of the public that I was sexually abusing my son.

It is worth mentioning that there are a few articles by professionals
concerning persons with PIMD who had no capacity to understand or provide
consent but this was mainly in the context of sexual abuse by parents,
caregivers, friends or strangers. I am in complete agreement with the ethics and
laws to protect profoundly disabled persons from sexual abuse but I would
defend my action by stating that the therapeutic masturbation I am providing to
my son is, by definition, not a sexual act but a medical treatment and would
fall under the contentious ethical issue of the rights of parents to provide
medical treatment to a person who cannot understand or provide consent, similar
to the case of Ashley X.

The reason why almost all parents and caregivers ignore or fail to
recognise the sexuality of children with PIMD is complex and varied but some of
the main reasons are:

·Parents
and caregivers are so overwhelmed by the basic daily care of children with PIMD
that they cannot even consider the sexuality of their profoundly disabled and
dependent child. Parents and caregivers tend to prioritize the multiple
disabilities facing the child such as physical and sensory impairments,
communication impairments, incontinence, impairments concerning mobility,
behavioural challenges and consider the sexuality and sexual expression of the
child as least important or not worth considering.

·Parents
are uneducated about the sexuality and sexual expression of persons with
disabilities which makes it difficult on how to act when encountering the
sexual awakening of persons with PIMD.

·Religious
and cultural beliefs of parents and caregivers exclude the profoundly disabled
child from being regarded as a sexual human being and parents face moral
dilemmas when confronted by their disabled child’s sexuality.

·There
is a taboo in discussing general sexual matters such as masturbation in society
and this attitude gets aggravated in the discussion of sexuality of persons
with disability.

·The
legal law stating that any sexual activity with a non-autonomous person who
cannot understand and provide informed consent is regarded as sexual abuse,
stops any parent or caregiver from wanting to provide sexual therapy.

·Parents
and caregivers find that they are unable to access professional help from
sexual therapist and / or sex workers because they are either non-existent,
illegal or untrained to provide the necessary sexual therapy treatment for
persons with PIMD.

I conclude by stating that I know the fundamental and vital role that
parents and caregivers play in providing care and nurture of children with
disabilities. I also understand the difficulties confronting parents and
caregivers in the daily care of children with PIMD. It is within this context
that I wish to appeal to parents and caregivers to consider that such care and
nurture includes sexual care and this begins by recognizing that all persons
with disabilities are sexual human beings. It is not my intention to antagonise
or ridicule parents and caregivers to arrive at this recognition but to use my
personal experience and love of my son with profound disability to cajole and hopefully inspire other parents and caregivers to
help resolve the dilemma when they encounter the sexual expression of their own
children with disabilities. Persons with PIMD are the most vulnerable persons
of our society and they need the help of all able-bodied persons, like you and
me, including parents and caregivers, to be able to give expression to their
silent voice. Finally, most of what I have stated is beautifully encapsulated
by a giant of a social worker and lecturer, Ann Craft in a saying way back in
1987:

‘To be a human being is to be a sexual being.
Although there may be a range of intensity, varying over time, we all have
sexual needs, feelings and drives, from the most profoundly handicapped to the
most able among us. Although we can shape (and mis-shape) sexual expression,
sexuality is not an optional extra which we in our wisdom can choose to bestow
or withhold according to whether or not some kind of intelligence test is
passed.’

PS. Since opening this blog the article was published by Exceptional Parent (EP) magazine in June, 2016. Exceptional Parent is dedicated to the welfare and care of persons with disabilities. The article was critically peer reviewed by the board of Exceptional Parent magazine and these included psychologist and legal experts. While the publication of the magazine does not indicate the approval of my actions of masturbating my son with disabilities it was published so as to create awareness and a broader debate concerning the sexuality of persons with profound disability. It should also be noted that Exceptional Parent would not have published the article if they for a moment thought I was abusing my son or that my actions would lead to the sexual abuse of other persons with disabilities.